Bottle o Tamoxifen
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I had hot flashes with radiation as well. They stopped shortly after my treatments were over. I am starting tamoxifen 3 weeks after I finished radiation. Hopefully like you I won’t have hot flashes. I have not had a period since I started radiation. Starting to wonder if I will ever have another one. So far with Tamoxifen I notice a little nausea and less of an appetite and I seem a bit more moody. I am so vain the side effect that worries me most is hair loss. At 49 I still have thick naturally blonde hair that I don’t want to lose. I know I have to age eventually but I feel like I’ Aged 10 years in 2 months
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thanks rah
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teva and mayne manufacturers seem to have less issues for some on tamoxifen. Maybe try different manufacturers.
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I just started Tamoxifen last week. The manufacturer listed is Zydus. Has anyone heard of this brand?
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No but hope it's good on you.
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Rah, I see my oncologist this coming Monday and if I have my wits about me I will ask him about this.
Musogirl, being young I see why your medical team is going at this with guns ablazin. You have a long life yet to live so they're throwing everything they have at the monster. But the hot flashes and other BS can be hard to live with. I take 10 mg a day, 20 mg on Wednesdays and Sundays and I still have or had a bunch of side effects. They might have been even worse on 20 mg daily. I don't know. I hope someone here has a trick or tip to make things more bearable.
I have hot flashes in the day that are tolerable, worse at night which make sleeping difficult, but the photosensitivity I have developed on tamoxifen is crazy! So now when it's a million degrees outside I have to be in long sleeves and long pants because anywhere the sun hits me I break out in a billion tiny blood blisters that look like a burn - but it's not a burn. It happens in just minutes. No pain or sting. Itch. Bright red. Alarming and apparently a rare reaction to tamoxifen. So now if I have a hot flash outside on a hot day it's a true, nuclear emergency, because I'm dressed for the depths of winter, covered up. Ugh.
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Thanks, Runor! Maybe between the two of our efforts, we can solve the magic riddle of how T works
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Hey Christine1975,
I tried a bunch of tamoxifen brands to see if I could find one that wouldn't fatigue me completely, and Zydus was the most recent. It wasn't any better for me on the fatigue end, but it wasn't any worse either. And it didn't have the mood effects for me that the Actavis did.
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Thank you, Salamandra!!! I don't feel well on this so far!!! I'm tired, have headaches, and nausea!! Hope all of us feel better soon!!! Hugs to everyone!!!
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I'd report it to your mo. Maybe another brand would at least ger rid of nausea. Fatigue is common. I take naps.
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Thank you, Rosabella! I did speak with my MO and she basically said it's 20 mg only! No option of 10 mg (even though I've been taking only 10 mg since I can't tolerate any additional dose right now.) She told me that 20 mg is the only dose that has been found to be effective and data-driven. The other option is to have my ovaries removed and take Femara. Ugh! I already have osteoporosis. I feel like there are no good options.
Hope everyone has a great day!
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That's what mine says too. Not enough data on 10 mg per day.
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Christine1975- I had pretty bad nausea when I first started. I was taking zofran several times a week. That did eventually subside, so hopefully that will be the case for you. The fatigue for me has been horrible, and definitely affects my QOL.
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Thank you ladies so much! I forgot about Zofran....I took it during chemo, so maybe my MO will refill it for me. I hope it subsides, too. The fatigue is awful! I never used to take naps, but now it seems mandatory to even be able to function.
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Musosgirl I did 10mg for a couple of weeks then 10 in the morning and evening and things weren't too bad. After a couple of weeks I went to 20 mg at once and after about a week the hot flashes really kicked so after 10 days I said enough of this and went back to 10 mg in the AM and PM. Amazingly after 3 days my hot flashes diminished. I do get some "warm" flashes, but most of the time things are tolerable. Good Luck!
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Hey Christine,
Every time I switched brands, I had an adjustment period of a few days to a week. Usually a lot of the early symptoms (for me, more heartburn and joint pain) went away by then. And just the fatigue remained!
It's true that 20mg is the lowest proven dose. But it's not that the lower doses have been proven wrong, it's that they haven't been proven right. To me, there's a big difference.
My MO also wants me on 20mg, but after all my months of trying, she's willing to for me to try a slow tapering up to get there. I'm also going to be pushing her to let me try provigil for the fatigue, if the tapering up doesn't do the trick.
My SO nurse practitioner mentioned on the sly that she hears of a lot of patience just taking a lower dose without their MO's blessing or even knowledge. I wish MOs understood this...
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Christine19, ask your oncologist to produce the data that says other dosages were tested and only 20mg was found to prevent recurrence. She is correct that the data is based on 20mg dosage - but that is NOT the same as saying that the 20mg dosage was tested and arrived at as the lowest effective dose. What she should say is: "There is no data showing that tamoxifen was tested at a variety of dosage levels and in the absence of such data, I am legally bound to support the status quo, which is 20mg, even though that was not arrived at by any rigorous testing methods. It is what the book says to do and having no other information I have to stick with the book. "
My oncologist would not have given me permission to take half a dose daily. I decided that was what I was doing. Then I told him what I was doing. He said some tamoxifen is better than no tamoxifen.
Having said that, in the beginning the side effects were pretty miserable but have tapered off in severity over time. Not gone, but they either got a bit better or I got used to them. Either way it did take time.
Sorry you are having such a rough time. This whole rodeo is not a fun place to be.
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Mymomsgirl Thanks for commenting about splitting your dose of 20 to 2x per day. You said it improved your hot flashes. I've been taking 20 mg for almost 7 years now and never thought of splitting the dose. I will try that and maybe both the hot flashes and the joint pain will ease up. Glad it worked for you
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Thank you so much, Runor and Salamandra! I will probably just keep taking only 10 mg without my MO's blessing. At this point, I am going with my gut feeling of 'some is better than none.' I am just too sick to increase my dose right now. My MO wants me to try it for a month and if it doesn't improve, she wants me to go on monthly Lupron injections plus Femara. The other option is oophorectomy. So confusing due to all the choices and all of them having SE's!! I already have osteoporosis, so none of the alternatives really appeal to me in terms of bone loss. Sigh. Oh well, I hope everyone is doing well this weekend. Thank you so much for the support!!! Lots of hugs sent to all of you!
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Christine1975 -> This journey is so difficult. Weighing the risks versus quality of life isn't easy. For me I have wrestled with it the entire time. I'm just starting my OS + AI (ovarian suppression + aromotase inhibitor) trial since 5 mg of Tamox left me without QOL. I hope you will find a mix that works for you. Keep posting. This community is awesome.
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Spoonie, what is OS+AI???
I was on all three AIs and I got 2 years in, but just couldn't work with the joint pain and hand dysfunction. I also lost 15% of my bone mass in less than 2 years. I am going to try T next. Was at an interesting lecture last week at our BC Center. The dr commented that her in the US the dr gives the patient information and then asks them what they want to do, and in his home country the Dr uses their resources to develop the best plan and tells the patient what to do. There are pros and cons about each approach. He also spoke about how BC is not like other cancers.The recurrence of BC is much higher than other cancers. YAY ;(
I am hoping the SEs from T will be better than what I had on AI. I wonder if I will lose more hair than I have already lost? Anyone have experience with that? Can you use Rogain to re-grow hair, or is that a hormonal treatment? Have a good week everyone! I am having my colonoscopy tomorrow. Prayers please that there are no signs of colon cancer. It would be my third cancer in 2 years, and I just am no ready for that right now! Thanks!
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Hi 2Fun - sorry for the abbreviation. OS + AI is just a quick way for some of us younger ladies to say ovarian suppression (with Lupron or Zoladex injections) plus a aromatase inhibitor medication.
I hope you have less SEs on Tamoxifen too. It works for some people. I have heard that some AI's do cause some hair loss in some patients. I think some do use Rogaine or the likes. Good luck on your Colonoscopy tomorrow. Keep us posted on how it goes. May it be clear. Fingers crossed.
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thanks spoonie-I was not getting the "suppression"
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Yeah, the ovarian suppression is for those of us that are still pre-menopausal and who cannot take Tamoxifen. In order to take an AI like Arimidex or the like, we have to be medically put into menopause so the AIs will work for us. Fun stuff. <eye roll> But, whatever it takes, I'll give it a shot...pun intended.
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Saw my MO this morning, and he verified that in my individual case, tamox reduces my recurrence risk by 30%, which in my case is 4-5%, from 14-15% down to 10%. Now I have a lot of thinking to do because I’m not sure it is worth the slew of SE’s and potential other illnesses that tamox can cause.
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kec, can I ask what your oncoscore is? My numbers are similar, but not exact, as yours and tamox reduced my recurrence from 30% to 28% for the next 15 years. I am 56, so it seems like a small number, but I am really hopin gthat I have more like 30 years left on this planet!LOL
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just left MO for first follow up since starting tamox in May. My goal is 10mg and I am still on 5, 5, 10 repeating...he was FINE with that! He actually said some is better than none...which I have heard many of US say...TT
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2FUN my oncotype dx score was 21. What was yours? TrmTab, I told my MO I was only taking 10mg per day and he was adamant that this “is not adequate therapy dose”. I feel like some is better than none
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I also had a follow-up appointment with my oncologist today and asked him, hey, what if I'm a bad metabolizer? Does Oncotype test to see if I metabolize tamoxifen effectively?
He said, no, Oncotype does not test for that. He said the Onco test is based on the population reacting in an average way to tamoxifen. He went on to say that although there is some evidence that some people are poor metabolizers, the proof is not conclusive that they are not still getting some benefit from the smaller amount of tamoxifen they are able to metabolize. Which goes back to the often heard phrase (out of the mouths of medical professionals) that SOME tamoxifen is better than NO tamoxifen.
Kec1972, I am repeating myself relentlessly here, but ask your doc to provide you the clinical evidence that says 10 mg a day is NOT ENOUGH tamoxifen. I am not saying it is. But your doc also can not say it isn't. We're both just guessing. 20mg a day is the standard dose. But is it adequate? More than adequate? Would 10 work just as well? Unclear.
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Hi Runor, he was somewhat pissed when I told him I was only taking 10mg per day. I asked him if he'd heard of/read the studies out of San Antonio that proved that 5 or 10mg is just as effective as 20mg(granted, for DCIS, but who's to say it wouldn't work for us invasives too?). He hadn't heard of the study at all. He just kept repeating that 10mg is “not effective therapy." I have no interest in going up to a 20mg daily dose if it means sacrificing my QOL for 4-5 percentage points. Plus, my liver enzymes were already off when tested today after only a couple of months at the 10mg dose. I'm going to just continue with the 10mg for now, without his blessing.
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